Sebastian: his other challenges

Let me put it out there right now that I was not one of those mothers who intuitively "just knew"  that her child had developmental delays.  Sebastian is my first child; I was quite set on being laid-back and not getting caught up in the whole "My kid is doing ____." thing that happens with parents.  Somewhere around ten months, a friend tried, as delicately as possible, to suggest we have Sebastian checked for some delays.  She was right; Steven and I were blindsided and way pissed.

Fortunately, Sebastian has always been an incredibly healthy kid.  Aside from well-baby check-ups, we never spent much time with his pediatrician.  In short, we all--former pediatrician included--missed it.  We didn't see his seizures or his delays until his delays were extraordinarily obvious.  Sebastian looks very much like a typical kid.  It's a blessing and a curse.  In seeking services, I've forced a lot of evaluators to keep working with him beyond the allotted time so they see he's not just "being shy." You have to spend a fair amount of time with him to realize how many challenges he faces, in every developmental area, every minute of his life.

Like in his picture, he's pretty charming, especially when he's smiling (feel free to adjust for maternal bias). The following isn't how I think of, or define my child, but if you're still reading my posts, I'd like to give you a clear picture of Sebastian, beyond his epilepsy:

Sebastian has extremely "low muscle tone," he does not walk and cannot bear weight on his legs without holding on for support.  He crawls and climbs, but has been "toddler cruising" for over two years.  The improvement is steady but very small.  The low tone also affects his oral muscles, affecting his ability to chew, swallow and achieve proper lip closure.  It affects his vision, as well as his urinary continence, an issue we're still figuring out.  He also has a nystagmus, a constant flutter of his eyeballs, that force him to look out of the right side of his eyes for the steadiest vision (most of the time he just looks like he's flirting, again, that misleading charm factor).  Sebastian's fine and gross motor skills are hovering around those of a child 12-18 months old.  He cannot feed himself.

While Sebastian's hearing and vision are generally fine, he has a few sounds and just a handful of word approximations.  Communication is a huge issue for him.  He has about 30 signs which he uses regularly, and we are constantly working on expanding his signing vocabulary.  We weren't sure he knew his own name until he was two years old.  He can say "Mama" and "Dada." Vanessa is "Nene" and Alex is "Ayeh." Sometimes he uses our names in reference to us, but sometimes he just says them over and over.  After almost four years of this limited communication, most of our understanding of his daily needs and interests is intuitive.

In addition to these challenges, Sebastian also falls on the autism spectrum and has been diagnosed with PDD-NOS.  We first noticed his perseverative behaviors at about 20 months, when he would play with a particular spinning toy, and ONLY that toy.  For really long stretches.  He'd also do what we would affectionately call "inspection." He would lay on his stomach and touch the edge of the floor, where it meets the wall.  With great focus, he would continue around the perimeter of the room, as if he was checking out the craftsmanship of the baseboards.  It didn't matter if it was his room, our kitchen, or a place he had never been before.  He always had the same, intense focus.  Sebastian also had his own version of the traditional, autistic hand-flapping.  We called it "conducting," as he would move his hands gracefully up and down, as if he was leading an orchestra.  Again, quirky, but all part of the charm.

Lastly, if you have even had the stamina to get here, Sebastian deals with an intense Sensory Processing Disorder, which makes him incredibly sensitive to loud noises, clapping, and most recently, his sister, Alexandra, crying.  Conversely, Sebastian has very low sensitivity to physical stimulation in his body.  He has an incredibly high pain threshold, and needs very strong input to notice both internal and external stimuli.  In our old house, he would sit in my closet and pull the sliding door closed.  His legs would be in the way, preventing the door from closing completely, but he would continue to pull the door closed.  He didn't notice the door hitting his own legs, and he found the sensation of sliding the door back and forth too distracting to find a solution.

All this said, Sebastian is a smart, funny, engaging, extremely loving child.  He has a great sense of humor and very clear affection for his family, his Nene, his dogs and Toy Story.  He likes to paint, as long as he doesn't have to touch the paint with his hands.   He loves music, especially the Beatles, but also Daddy's beloved AC/DC.  He loves water, particularly running water, but will gladly settle for the bath or pool.

Sebastian is a happy boy who, despite his challenges, is loving and joyful.  We are relentless in finding ways to help him engage and participate with his world, as much as possible.  For us, though, Sebastian is perfect just as he is.